Prioritizing supports and services to help older adults age in place: A Delphi study comparing the perspectives of family/friend care partners and healthcare stakeholders

Aging in place (AIP) is a policy strategy designed to help older adults remain in their community. While planners internationally have modified aspects of the older adult care continuum (e.g., home care, assisted living, nursing homes) to facilitate AIP, further improvements to community-based supports and services are also required. This study compared and constrasted the community-based factors (e.g., supports, services and personal strategies or characteristics) that family/friend care partners and healthcare stakeholders (i.e., planners/providers) view as most important to help older adults successfully AIP.; An initial list of factors shown to influence AIP was created from the academic literature. These factors were used to develop a Delphi survey implemented separately on care partners and healthcare stakeholders. Respondents rated the importance of each factor using a 10-point Likert Scale (1 = not important; 10 = absolutely critical). Consensus in each group was defined when at least 80% of participants scored a factor ≥8 ("very important"), with an interquartile range ≤2. Respondents suggested additional factors during Delphi round one.; Care partners (N = 25) and healthcare stakeholders (N = 36) completed two and three Delphi rounds, respectively. These groups independently agreed that the following 3 (out of 27) factors were very important to help older adults age in place: keeping one's home safe, maintaining strong inter-personal relationships, and coordinating care across formal providers. While healthcare stakeholders did not reach consensus on other factors, care partners agreed that 7 additional factors (e.g., access to affordable housing, having mental health programs) were important for AIP.; Compared to healthcare stakeholders, care partners felt that more and diverse community-based factors are important to support older adults to successfully AIP. Future research should replicate these findings in other jurisdictions, examine the availability and accessibility of the priority factors, and develop sustainable solutions to enhance their effectiveness

A cross-sectional study of the development of volitional control of spatial attention in children with chromosome 22q11.2 deletion syndrome

<p>Abstract</p> <p>Background</p> <p>Chromosome 22q11.2 deletion syndrome (22q11.2DS) results from a 1.5- to 3-megabase deletion on the long arm of chromosome 22 and occurs in approximately 1 in 4000 live births. Previous studies indicate that children with 22q11.2DS are impaired on tasks involving spatial attention. However, the degree to which these impairments are due to volitionally generated (endogenous) or reflexive (exogenous) orienting of attention is unclear. Additionally, the efficacy of these component attention processes throughout child development in 22q11.2DS has yet to be examined.</p> <p>Methods</p> <p>Here we compared the performance of a wide age range (7 to 14 years) of children with 22q11.2DS to typically developing (TD) children on a comprehensive visual cueing paradigm to dissociate the contributions of endogenous and exogenous attentional impairments. Paired and two-sample t-tests were used to compare outcome measures within a group or between groups. Additionally, repeated measures regression models were fit to the data in order to examine effects of age on performance.</p> <p>Results</p> <p>We found that children with 22q11.2DS were impaired on a cueing task with an endogenous cue, but not on the same task with an exogenous cue. Additionally, it was younger children exclusively who were impaired on endogenous cueing when compared to age-matched TD children. Older children with 22q11.2DS performed comparably to age-matched TD peers on the endogenous cueing task.</p> <p>Conclusions</p> <p>These results suggest that endogenous but not exogenous orienting of attention is selectively impaired in children with 22q11.2DS. Additionally, the age effect on cueing in children with 22q11.2DS suggests a possible altered developmental trajectory of endogenous cueing.</p

The experiences and needs of unpaid family caregivers for persons living with dementia in rural settings: A qualitative systematic review.

PurposeUnpaid family caregivers provide extensive support for community-dwelling persons living with dementia, impacting family caregivers' health and wellbeing. Further, unpaid family caregiving in rural settings has additional challenges because of lower access to services. This systematic review examines qualitative evidence to summarize the experiences and needs of rural unpaid family caregivers of persons living with dementia.MethodsCINAHL, SCOPUS, EMBASE, Web of Science, PsychINFO, ProQuest, and Medline were searched for articles investigating the experience and needs of rural family caregivers of persons living with dementia. Eligibility criteria were: 1) original qualitative research; 2) written in the English language; 3) focused on the perspectives of caregivers of community-dwelling persons with dementia; 4) focused on rural settings. Study findings were extracted from each article and a meta-aggregate process was used to synthesize the findings.FindingsOf the 510 articles screened, 36 studies were included in this review. Studies were of moderate to high quality and produced 245 findings that were analyzed to produce three synthesized findings: 1) the challenge of dementia care; 2) rural limitations; 3) rural opportunities.ConclusionsRurality is perceived as a limitation for family caregivers in relation to the scope of services provided but can be perceived as a benefit when caregivers experience trustworthy and helpful social networks in rural settings. Implications for practice include establishing and empowering community groups to partner in the provision of care. Further research must be conducted to better understand the strengths and limitations of rurality on caregiving

Dignity and Distress towards the End of Life across Four Non-Cancer Populations.

OBJECTIVE:The purpose of this study was to identify four non-cancer populations that might benefit from a palliative approach; and describe and compare the prevalence and patterns of dignity related distress across these diverse clinical populations. DESIGN:A prospective, multi-site approach was used. SETTING:Outpatient clinics, inpatient facilities or personal care homes, located in Winnipeg, Manitoba and Edmonton, Alberta, Canada. PARTICIPANTS:Patients with advanced Amyotrophic Lateral Sclerosis (ALS), Chronic Obstructive Pulmonary Disease (COPD), End Stage Renal Disease (ESRD); and the institutionalized alert frail elderly. MAIN OUTCOME MEASURE:In addition to standardized measures of physical, psychological and spiritual aspects of patient experience, the Patient Dignity Inventory (PDI). RESULTS:Between February 2009 and December 2012, 404 participants were recruited (ALS, 101; COPD, 100; ESRD, 101; and frail elderly, 102). Depending on group designation, 35% to 58% died within one year of taking part in the study. While moderate to severe loss of sense of dignity did not differ significantly across the four study populations (4-11%), the number of PDI items reported as problematic was significantly different i.e. ALS 6.2 (5.2), COPD 5.6 (5.9), frail elderly 3.0 (4.4) and ESRD 2.3 (3.9) [p < .0001]. Each of the study populations also revealed unique and distinct patterns of physical, psychological and existential distress. CONCLUSION:People with ALS, COPD, ESRD and the frail elderly face unique challenges as they move towards the end of life. Knowing the intricacies of distress and how they differ across these groups broadens our understanding of end-of-life experience within non-cancer populations and how best to meet their palliative care needs

Correction: Dignity and Distress towards the End of Life across Four Non-Cancer Populations.

[This corrects the article DOI: 10.1371/journal.pone.0147607.]

Priorities for caregiver research in cancer care: an international Delphi survey of caregivers, clinicians, managers, and researchers

With an increased investment in psychosocial caregiving research, it becomes critical to establish the need for data of key stakeholders and future strategic directions. The purpose of this international Delphi study was to engage caregivers, clinicians, researchers, and managers to identify priority topics for caregiver research in cancer care. A three-round, online Delphi survey took place. In round 1, stakeholders generated caregiver research topics by answering an open-ended question. Content analysis of stakeholders' answers identified topics to be included in the round 2 survey to rate their importance. The round 3 survey included topics with less than 80% agreement for stakeholders to reconsider in light of other participants' responses. In round 1, eighty-six topics were generated by 103 clinicians, 63 researchers, 61 caregivers, and 22 managers and grouped into 10 content areas: impact of cancer, support programs, vulnerable caregivers, technology, role in health care, caregiver-centered care, knowledge translation, environmental scan, financial cost of caregiving, and policy. Across rounds 2 and 3, nine topics achieved consensus for all stakeholder panels (e.g., home care interventions), with three of these emphasizing more research needed on the financial impact of informal caregiving (e.g., financial impact of "burnout" for caregivers and society). Of note, vulnerable caregivers and use of technology were content areas prioritized particularly by managers and researchers, but not caregivers. By establishing a confluence of perspectives around research priorities, this study ensures the interests of key stakeholders are integrated in strategic directions, increasing the likelihood of research capable of influencing practice, education, and policy

Percentage of Participants with Individual PDI Problems (>3) Across Four Study Groups; and by SISC Dignity Ratings.

<p>Percentage of Participants with Individual PDI Problems (<u>></u>3) Across Four Study Groups; and by SISC Dignity Ratings.</p

Scores on Measures of Functioning Across the Four Study Groups; and Mean Levels of Functioning by Level of Dignity.

<p>Superscript indicates ranking of functioning between groups [1 = highest, to 4 = lowest]</p

Percentage of Participants with Existential Distress Across Study Groups; and by SISC Dignity Ratings.

<p>Percentage of Participants with Existential Distress Across Study Groups; and by SISC Dignity Ratings.</p